On October 7th, 2013, we lost our 2nd daughter Korie to a heart condition called Long QT Syndrome. Long QT Syndrome is a genetic arrhythmia disorder of the heart, which can lead to sudden cardiac arrest when someone is startled, sleeping, resting, or exercising. Soon after her birth, at just four days old, Korie underwent open-heart surgery to have a pacemaker placed to regulate her heart rate. Her prognosis was great and her specialists expected her to live a healthy normal life. Unfortunately at just 5 ½ months old, while napping at her grandmothers house, our healthy, happy, vibrant, sweet baby girl went into cardiac arrest and passed away in her sleep.

After the shock of losing Korie, we were advised to do genetic testing on the entire family, and found that she was not the only one in our family carrying the Long QT Syndrome gene. Korie’s older sister Brodie and I (her mom) are both carriers, even though we have never displayed any clinical symptoms as Korie did. Brodie was such a loving sister to Korie, and we did not want her to grow up without a sibling to play with and love on. Knowing that the odds of having another child who carried the Long QT gene were not favorable, and that we could not imagine having to go through such a devastating loss once again, we decided to do IVF for our next pregnancy. IVF gave us the security of knowing that the embryo chosen would not carry the Long QT gene, and we would hopefully never again have to experience losing a child.

Our IVF was successful, and on July 29 2015 our 3rd daughter, Kacie, was born healthy as can be. She brought so much joy into our lives and we looked forward to seeing her grow and watching her play with her big sister. To everyone’s shock and dismay, our precious daughter Kacie also passed away in her sleep at just 2 ½ months of age.
Her cause of death thus far has been ruled as undetermined, but in our hearts we feel it was a heart condition as well. After her passing we had both autopsy reports compared and in Korie’s autopsy report there was something else found called Histiocytoid Cardiomyopathy which an extremely rare condition. Unfortunately, we were not made aware of this gene abnormality in Korie until after Kacie had passed away, so we were unable to screen for it during the IVF process. We currently have a specialist working to see if Kacie had this gene too, but the process could take years.

Thank you for reading our story and helping us honor our daughters,

The Joiner Family (Julie, Brad, and Brodie)